Is this GCA ?

Hi

I've been reading posts on here and thought I would write my own.

I'm 52 and went to my GP about 6 weeks ago having developed a sore patch on the side of my head. I also had some mild headaches so thought I'd get it checked out.

Dr said it was probably muscular even though I stressed that it certainly doesn't feel that way as it's in a particular spot and feels as if it's just under the scalp. I told my GP that I had also been feeling under the weather - tiredness and nausea for about a month as well.

I have psoriatic artritis so I also checked with my rheumatologist during my regular check up in December. She said it could not be GCA as I am too young. I had some MRI scans done on my neck and I'm waiting for the results of those.

A blood test showed my ESR was ok.

The sore patch on my head is getting bigger and I am feeling really shoddy ! I have intermittent headaches which are not like others I have had before. There is a soreness that occurs along my forehead and along the side of my head and I'm getting periods of dizziness. My eyes feel like they are straining to see.

I do get neck, hip and shoulder pain with my arthritis but it does feel worse at the moment.

I'm wondering if this may be early GCA which is slowly becoming worse and more symptomatic. I'm also concerned that my regular pain control meds are masking the pain ( I'm on Gabapentin 300mg 4 times a day)

If there is anyone out there who experienced similar symptoms when they first became ill with GCA / PMR I'd really like to hear from you.

As I'm sitting here I'm having intermittent pain in the side of my head which travels towards my forehead in a sort of "pulse". It's more of a soreness or burning than a pain. It's been going on all day !

Im going to have to back to the GP I think - but from experience I know they won't really listen. When I first started to get symptoms of Psoriatic arthritis they didn't take me seriously until I took them photos to prove that I was getting swollen hands in the morning so I'm gathering all the information I can before I go back !!!

I

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  • I am sorry Elfarron to hear yet another example of medical neglect, especially when your eyesight is possibly at risk and your persistence before arrived at a correct diagnosis. I have PMR and am alert to any head or eye symptoms to the point of neurosis. If I had your symptoms consistently and an incurious doctor, I would take myself off to A&E and describe my symptoms there in the hope of being throughly examined and taken seriously. I would be interested to know if your symptoms improved with Prednisalone. I know nothing of drug interactions and side effects but would your GP trial you on Prednisalone? It seems to be the Litmus test for PMR and GCA ( very large dose for GCA like 60 mgs). I believe some people get little warning before GCA permanently damages their sight. This needs to be treated with the appropriate urgency. Please let us know how you get on?

  • Hi Elfarron

    I just tell you my story, cause I knew nothing about PMR or GCA ,it all started 2 years ago,

    I started off with flu like symptoms and pain in my neck as though I had slept badly, and then developed pains in my thighs, until I couldn't get up off a chair or couldn't get out off bed,

    I went to the doctor and took some blood and results were my ESR and CRP were very high, she told me to go to A n E, I seen a good doctor up there and she said she thought it was PMR, but there was a rheumatologist doing her rounds and doctor asked her if she could come and see me, which she did and she diagnosed PMR so lucky to see a rheu at early stage, I was put on 20mg pred and pain disappeared and felt grand,

    But 2 weeks later when I was reducing the steroids, I was down to 12.5 mg, (maybe they reduced too fast) but I went to have my lunch and couldn't open my mouth, and noticed when I looked in mirror arteries were very visible at side of temples, and headache , so thanks to these forums, when I was on here people told me to get to A n E which I did they kept me in and was in for 4 days my dose of pred was increased to 60mg and they did a biopsy which was positive and I was diagnosed with GLA , I felt fine leaving hospital my ESR and CRP was down,

    But next day I woke up with terrible headaches, ( I thought I was having an allergic reaction to pred, I rang rheumatologist and she told me to come in, she didn't want to increase my pred, so she prescribed pain killers, which didn't work, I couldn't put my head on the pillow,

    The next week my sight went in right eye, but I was so lucky it came back, I had 3 episodes of this which was the most frightening experiences,

    They increased my pred to 80mg which has a lot of side effects, but didn't care so long as I had my sight back, I'm grand now have a few aches in morning mostly in my thighs and neck and down to 5mg see rheumatologist every 3 months,

    I'm a lot older than you, 64

    But just tell you about my daughter she was diagnosed in August with breast cancer, I was devastated, but they said they never seen this cancer in a person so young, she 35 they said this cancer is only ever seen in people over 60 and it grows at a slow rate, but because she so young it was grown rapidly very aggressive and 2 months from becoming bad as they said, anyway she had a double mastectomy , and is recovering and has been strong,

    I'm just making the point that nothing fits in boxes anymore I don't think it matters what age you are,

    So please get answers as to why your head is sore and painful, wish you luckX

  • Elfarron, yes, I'm someone who experienced nausea plus actual vomiting along with the more common symptoms whn GCA arrived on the scene.

    I'm with Sheffield Jane - with those symptoms, I would be heading off to A&E immediately, especially as both your GP and your rheumatologist are sounding less than knowledgeable - for instance, you are definitely not "too young". My friend's neighbour's son was diagnosed with temporal arteritis in his teens, and there is evidence of someone in their 30's having been so diagnosed at autopsy.

    It's possible to have a normal ESR but still have GCA - ask them to do a CRP test as that is often considered by some medics to be a more reliable marker of inflammation than the ESR.

    I so hope it isn't GCA as it sounds as though you have enough to be going on with, but do get it ruled out asap, and come back and let us know how you get on.

  • Even the international rheumatology guidelines say "over 50" so it is time your rheumy got her act together and got up to date! I really doubt though that gabapentin would mask GCA pain so don't worry too much about that.

    You could go to an optometrist and ask them to examine the back of your eyes - if there is already poor blood flow to the optic nerve that often shows up in the appearance of the where the optic nerve joins the back of the eye. It isn't fool-proof though.

    Where are you?

  • Hi Elfferon I am sorry to hear you feel so poorly

    Last Feb at the age of 52 I was diagnosed with GCA I had pains in my shoulders and neck which I put down to lying funny in bed and never connected it to the severe headache I devoloped 2 yo 3 weeks later thought at first it was a migraine but it didn't go and hit worse as the days went on

    I saw numerous doctors who gave their own diagnosis things went from bad to worse ended up in A& E and after a brain scan was told I had an infection in my sinuses but after strong antibiotics and pain killers it still didn't go I felt exhausted and had flu like symptoms pains in my eyes and an awful tenderness on the side of my head and face I couldn't even wash my hair or pluck my eyebrows

    I eventually had blood tests and high levels of inflammation showed up on my blood when I told the GP about the tenderness she rushed me to eye hospital I was put on very high dose steroids and lots of other meds they kept saying I was too young to have GCA but all the symptoms were saying it was

    I had a vey tough few months terrified and feeling completely out of control the side effects were awful I put so much weight on and for a while I thought I was going mad ! But I had my sight!

    I am now nearly a year on and have got down to 6mg pred most of the side effects have now gone and I feel more positive

    Please get checked and don't be fobbed off because of your age it could be GCA and the sooner it's treated the better !

    Sending best wishes to you x!

  • Hi I started 2 year ago with gca later pmr my blood's we're over 100 started on 60mg steroids at the moment I'm on 15 mg esr crp 26 it goes up and down it has effect my eyes but I haven't lost my sight thank god. I'm hoping this next year will be the last. Wishing you all the best x

  • The first time I saw a rheumy, surprisingly, he checked my feet. I had hard skin on both heels, numbness in right toes and hard skin on tops of toes - both feet. This prompted him to get me full blood tests for CRP and ESR and sent me for an MRI scan and temporal biopsy. Shortly after I was diagnosed with GCA - whole vascular system was inflamed. It's more usual in folks over 60 but there have been some cases of GCA in the 50's, and one I read of in the mid 20's.

    I only mention this as feet are a sign that arterial inflamation is reducing blood flow in the peripheries, notably fingers and toes. So it's worth checking your feet for signs of any encroaching GCA. Hope that helps and arms you with an additional clue. :)

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